KNOWLEDGE SUMMARY

PLANNING: PLANNING COMPREHENSIVE BREAST CANCER PROGRAMS: CALL TO ACTION

About this Knowledge Summary (KS):

This summary covers planning for breast cancer programs, including long-term planning. It provides an introduction to two important concepts: knowledge summaries and resource-stratified pathways. KNOWLEDGE SUMMARY PLANNING: PLANNING COMPREHENSIVE BREAST CANCER PROGRAMS: CALL TO ACTION KNOWLEDGE SUMMARY PLANNING: PLANNING COMPREHENSIVE BREAST CANCER PROGRAMS: CALL TO ACTION

KEY POLICY SUMMARY: Resource-stratified pathways across the INTRODUCTION continuum of care Breast cancer control programs • Program design and improvements should be based on & THE CHALLENGE • National breast cancer control programs can be developed identified needs and barriers, outcome goals and available Breast cancer is the most prevalent cancer in women and implemented at all resource levels. resources. worldwide, affecting over 1.5 million women each year. • Successful breast cancer programs offer women with breast • Breast cancer programs should follow a defined resource- Low- and middle-income countries (LMICs) bear an increasing cancer the best possible outcomes while effectively using stratified pathway to ensure coordinated incremental and disproportionate share of the disease burden. Women in available resources. program improvements across the continuum of care low-resource settings commonly present to a healthcare facility (see Table 1). with advanced breast cancer and have a poor prognosis (as Policy planning low as 15% overall 5-year survival in some regions) and poor quality of life. In high-income countries (HICs), breast cancer • Effective cancer control programs require comprehensive control programs have successfully reduced the percentage cancer control plans. of women who present to a healthcare facility with advanced • A fundamental shift in cancer program planning is needed breast cancer. Most women diagnosed with early stage disease – from short-term, vertically funded programs, to long-term (I and II) have a good prognosis with overall 5-year survival POLICY ACTION programs integrated into the overall health system. rates of 80-90%. Differences in outcomes between LMICs and OVERVIEW • Comprehensive national cancer plans can provide the HICs have been attributed to effective awareness and screening Preplanning framework for breast cancer program development, but programs, timely access to appropriate treatment and reduced should be adapted to meet local needs and available cultural barriers to care in HICs. There are also differences in • Assess if a new breast cancer program is resources and should be integrated into existing services breast cancer supportive care services, such as survivor networks needed (e.g., program is nonexistent, outdated, along the continuum of care. and access to pain management. The success of breast cancer ineffective, not resource-appropriate or new • Data on existing health system capacity can identify areas control programs in HICs (and some LMICs) demonstrates services will be integrated). that improvements in early diagnosis, effective treatment and for program improvement. • If needed, who will lead the process? supportive care are achievable. The challenge is to make breast Breast cancer control programs cancer control planning and program implementation a health Planning Step 1: Where are we now? priority (Investigate and assess) • National breast cancer control programs can be developed In 2005, the World Health Organization (WHO) passed and implemented at all resource levels. • Assess the breast cancer disease burden and the a landmark resolution on cancer prevention and control, • Successful breast cancer programs offer women with breast capacity of the health system to respond to breast recognizing that cancers could be prevented or detected early in cancer the best possible outcomes while effectively using cancer cases (human resources, gaps in services, their development, treated and cured; and that all countries can available resources. barriers, etc.). design and implement effective cancer control plans that allow for a balanced, efficient and equitable use of resources Planning Step 2: Where do we want to be? Knowledge Summaries (KS) for breast (see Table 1). (Set goals and objectives) cancer control • Identify and know your target population • KS can be used in developing or implementing national • Identify and engage stakeholders cancer control plans to inform stakeholders about key breast cancer policy issues. • Identify goals, priorities and strategies based on effective utilization of existing resources, • KS can ensure that key information needed to understand and development and implementation of new resource needs along the continuum of care (prevention programs in a stepwise fashion along a resource- through treatment and palliation) are shared among stratified pathway. stakeholders and decision makers. • Assess feasibility of interventions • KS provide resource-stratified pathways and can facilitate decision making by policy makers, healthcare administrators Planning Step 3: How do we get there? and advocates engaged in implementing breast cancer (Implement and evaluate) control programs at various resource levels. • Follow a resource-stratified pathway for prevention, early detection, diagnosis, treatment and palliative care. • Engage appropriate resources, decision-makers and staff • Use the pathways to ensure that improvements in breast cancer control take place in parallel along the continuum of care. • Match resource-level investments along the continuum of care. • Monitor and evaluate

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WHAT WE KNOW Prioritizing breast cancer programs in the Historically, breast cancer programs have been integrated using health system a “vertical” or “horizontal” approach. In a vertical approach, Breast cancer care is most successful when programs are introduced and run separately from other existing Health systems are faced with balancing four competing health programs; whereas in a horizontal approach, a new prevention, early detection, diagnosis, principles: scope of services, equity in access to services, quality program is integrated into existing health programs. Though treatment and palliation are integrated and of care and cost containment. Using a scope of service approach each approach has advantages and disadvantages, the emphasis requires health systems to assess and coordinate available public synchronously developed. Early detection on implementation should be on integration, for example adding and private services. Equity in access to services requires health in prevention strategies into existing women’s health services does not benefit a woman unless she has systems to ensure that women in rural settings and of lower but also establishing new cancer treatment services, utilizing timely access to appropriate treatment. A socioeconomic status have access to breast services. vertical-horizontal synergies or a “diagonal approach”. Factors patient-centered treatment plan cannot be Quality of care requires routine evaluations for safety, that impact the implementation of health programs include: generated without an accurate pathologic effectiveness, patient-centeredness, timeliness, efficiency and the behavior of healthcare professions and other stakeholders, equity. It also requires an ongoing evaluation of the burden leadership of the reform, political will and strategies, relationship diagnosis, and a patient’s preferences of disease (e.g., increase incidence or change in late stage between advocates and policymakers, ownership of the and barriers to treatment adherence are versus early stage presentation) and the potential for dramatic program, timing of the proposed intervention and sustained identified and addressed. Comprehensive improvement in patient care such as the introduction of new financial resources and commitment. targeted therapies or psychosocial services. breast cancer care requires an effective These factors should be considered as new programs are proposed. Additionally, partnerships between researchers, health health system with trained community health Each country, and each region within a country, will have a different set of health priorities. Breast cancer programs should professionals, advocates and policymakers must be developed personnel, nurses, psychologists, therapists be implemented based on available resources, and the projected and maintained to ensure programs function effectively and and other professionals. benefit (e.g., reduction in late stage disease presentation, policies are evidence based rather than politically motivated. improved access to care), using a resource-stratified pathway that Burden of breast cancer disease will allow programs to advance in a coordinated and stepwise National policies and local implications fashion across the continuum of care. Process metrics should Healthcare delivery at the local level (micropolicy) is impacted Breast cancer is the leading cause of cancer death among be built into all project plans to identify and measure program by national policies (macropolicy), particularly for healthcare women, accounting for 23% of all cancer cases and 14% of strengths and weakness. Framing programs using these four resource allocations and financing issues. In low-resource cancer deaths. Between 1980 and 2010, the annual number competing principles can help prioritize interventions. of breast cancer cases worldwide increased more than two and settings, high user fees imposed by national policies may a half times, from 641,000 to 1.6 million. By 2030, the total negatively impact local healthcare utilization and place an Translation of research into health policy and number of breast cancer cases per year is expected to reach unsustainable financial burden on patients and their families. 2.4 million, with an increasing proportion occurring in LMICs. practice National policies must balance cost containment and the Currently, more than half of new breast cancer diagnoses and Effective translation of research into health care policy and financial burden of care to patients and health systems to 62% of cancer deaths occur in LMICs, the majority of these practice requires analysis of the existing health system and ensure women of all socioeconomic statuses have equitable diagnoses are late stage or advanced disease. an understanding of the barriers to implementation of access to care. This requires healthcare policymakers and evidenced-based practices. Qualitative research (focus groups administrators to have a detailed understanding of disease management and local socioeconomic factors that contribute Financial burden and economic impact of and interviews) can help identify existing barriers, for example to disparities in access to care. breast cancer identifying why some women in the target population do not take advantage of breast health awareness or screening Patients, families and societies all experience the financial burden services, while implementation science provides a method by Human resources and economic impact of breast cancer. In addition to the direct which researchers can assess new interventions or understand Human resource limitations (volume and training) pose a medical costs (which increase with late stage diagnosis), there a causal relationship between an intervention and its impact. significant challenge to accessing care, particularly in low- are costs associated with transportation, childcare and housing Implementation science is the study of methods to promote the resource settings. Health professionals often encounter as well as the hidden costs of lost productivity due to morbidity effective integration of research findings and evidence into policy unfavorable work environments, heavy workloads and low or premature death. and practice and seeks to understand barriers to implementation remuneration, among other concerns, which are compounded Cost-effectiveness analyses on breast cancer care interventions as well as the behavior of healthcare professionals and other by projected shortages of nurses and physicians at all resource are available, but vary widely and the transferability of these stakeholders as a key variable in the sustainable uptake, levels. Gaps in and barriers to breast cancer care exist at all evaluations across countries is difficult, as clinical practice adoption and implementation of evidence-based interventions. resource levels and income settings, and discrepancies in care patterns, health systems and cultural and social practices differ. This type of research is essential to understanding and effectively may worsen as greater demand is placed on the health system Nevertheless, reviewing cost-effectiveness studies from other addressing potential problems such as sub-optimal participation (see Improving Access to Care module). countries may help inform breast cancer control planning in screening, poor referral rates or high loss-to-follow up. discussions and resource allocations.

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WHAT WORKS Health systems design – centralized services Health systems must be designed to optimize services and Collaboration: multi-stakeholder and coordinate care amongst primary care centers (which are the multi-sector involvement most frequent first contact for breast cancer patients), specialist Collaboration among all health sectors and stakeholders is services (e.g., biopsy, cytology, pathology review), treatment essential to advancing healthcare delivery. In many countries, services (e.g., surgery, radiation therapy, systemic therapy) the government shapes healthcare through legislative and palliative care services. The relationship between volume policies, budget allocation, training of health professionals, and outcome should be considered, particularly for invasive promoting research agendas and maintaining oversight. procedures or advanced modalities (i.e., higher volume often Achieving governmental support for healthcare issues requires results in better outcomes). However, centralization of breast collaboration between committed health experts, advocates and cancer services may also increase barriers to care, particularly for policymakers to generate the necessary political will to support women in rural communities who already have limited access to change. Advocacy efforts by breast cancer patients and survivors, early detection and primary care. Standardization of protocols, a their families and friends, health professionals, health industry transparent system of referrals, multidisciplinary team approach, and the media have all impacted the promotion of breast cancer quality assurance measures (i.e., process metrics), patient care in HICs. Greater impact can be achieved when efforts navigation and a patient-centered approach to care are all critical are coordinated to guide policymakers toward effective and features of an effective health system. desirable change. Data collection and cancer registries Private institutions and non-governmental organizations (NGOs), in the field of cancer as well as reproductive and Identifying the scope of the burden of breast cancer can be women’s health, should be considered as potential partners and difficult in regions without cancer registries, precise demographic contributors to healthcare delivery in all resource settings. NGOs data or documented causes of death. In such situations, a review Available country self-assessment tools PLANNING STEP 1: provide a variety of services including research support, financing of hospital-based records or registries can provide an estimate WHERE ARE WE NOW? • WHO One Stop Portal for NCD Prevention and programs, communicating key messages and educating of the breast cancer incidence. Data on tumor stage at initial Control Tools www.who.int/nmh/ncd-tools/en/ the public, strengthening existing collaborations, providing diagnosis should be collected as part of cancer registries, as POLICY ACTION: this data can inform program direction. For example, if most • WHO National cancer control programs fellowship training grants, sponsoring workshops and promoting INVESTIGATE AND ASSESS breast cancers are being diagnosed at an advanced stage, www.who.int/cancer/nccp/en/ government and policy action. Academic institutions can also serve as valuable partners, using a shared partner model known assessing and improving efforts to increase early detection Assess the breast cancer burden • WHO Cancer control: knowledge into action as twinning, wherein two or more global institutions share would be warranted. Establishing and administering a cancer www.who.int/cancer/modules/en/ • Cancer registries can provide data on breast cancer experience, expertise and resources toward a common goal. registry requires participation and coordination of governmental incidence and reflect the demographics at risk, as well • The National Cancer Institute: Human agencies, health facilities, health professionals and other as capture disease stage at presentation. Resource Assessment http://rrp.cancer.gov/ NGO participation in health programs should be coordinated stakeholders. Countries developing new registries can benefit with the governmental health agency and monitored for the • Hospital-based records or registries can help establish programsResources/human_resources_needed.htm from lessons learned by those with established registries and effects on health system infrastructure and equitable delivery of the local disease burden if population-based registry • The International Cancer Control Partnership portal should consider contacting relevant countries. care. The activities of the non-governmental and private sector data are not available. www.iccp-portal.org may limit health system efficiencies and effective resource- • Consider regional variations in the incidence of breast stratified planning if these efforts are not synchronized with cancer. health policy efforts.

Assess existing cancer control plans and activities Survivors as stakeholders and advocates for • Review current breast cancer control programs and/or patient-centered care perform a country-wide situational analysis of breast Breast cancer survivors can help ensure that programs are locally cancer care. relevant, can inform key quality of care and patient-centered • Assess what is available, where it is available, how it care issues and can enhance the sustainability of programs. is being used and the quality and effectiveness of the Patient-centered care (i.e., the use of individual patient values service. and preferences to guide cancer care decision making) has been • Assess human resource capacity, breast cancer shown in HICs and LMICs to be effective and does improve awareness and early detection programs, availability patient decision-making and satisfaction with care. of diagnostic and treatment modalities and supportive care services. • Assess barriers to program implementation and utilization of services. • Establish a baseline reference for future program development and evaluations.

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HOW DO WE GET THERE? Research and data PLANNING STEP 2: Health ministries in LMICs often have limited data available The resource-stratified pathway WHERE DO WE WANT TO BE? to determine how breast cancer can best be managed in a Countries vary in wealth, culture, and societal preferences country or region. Research collaborations and standardized POLICY ACTION: in regard to healthcare; within countries there can be vast data collection are required to advance breast cancer program IDENTIFY OBJECTIVES AND PRIORITIES differences in capacity and in cancer burden, most notably planning, and are increasingly becoming priorities in LMICs. between urban and rural areas. Evidence-based resource-neutral In the African Union, 20 countries now have cancer registries; Know your service and target population guidelines from HICs cannot always be easily translated into and there are over 700 LMIC studies published on breast cancer awareness. • Identify and engage stakeholders in breast practice in limited-resource settings. Resource-stratification cancer program planning, including identifying is a process whereby standard healthcare interventions are Clinical research in LMICs is expanding to include disease risk target populations for program outreach. grouped by attributes that affect their feasibility in different factors, treatment efficacy and patient outcomes, breast cancer Relevant stakeholders are policymakers, health settings, including costs, level of complexity and demands on the program implementation and healthcare policy. Implementation professionals, administrators, donors, advocates healthcare system. science and qualitative research is being used to facilitate (including patients and breast cancer survivors) The Breast Health Global Initiative (BHGI) applied an evidence- breast cancer care delivery by assessing the social, psychological and the general population. based consensus panel process to build a framework defining and system barriers to care. Situational analyses can provide • Identify high-risk groups using breast cancer resource prioritization pathways for early detection, diagnosis, comprehensive contextual reviews of an existing health system incidence and risk data. treatment, and delivery systems at four levels of available or health program, and needs assessments can identify gaps between a current situation and a targeted outcome and identify • Identify underserved groups including the rural resources: basic, limited, enhanced, and maximal. Resource- areas needing intervention. Collaborations in basic science and urban poor and those with limited health stratified guidelines provide an alternative framework and allow research generally require more intensive resources and expertise, literacy. ministries of health to identify deficits in resource allocations and facilitate breast cancer control planning. Resource-stratified but can provide important information about pathophysiology Identify gaps and barriers breast cancer guidelines, such as those developed by the BHGI, (i.e., cellular markers) of breast cancer in specific populations. PLANNING STEP 3: have improved health system coordination and are now being • Review existing information on health system Data collection should be tailored to inform policy decisions. HOW DO WE GET THERE? applied to other cancer programs. For example, an analysis of screening mammography capacity barriers and patient barriers to care in the target POLICY ACTION: population. Identify additional barriers and gaps in requires identification of the number of functioning imaging IMPLEMENT AND EVALUATE service for breast cancer care. Knowledge summaries for breast cancer control units, where they are located, whether and how they are being used, if the generated images are of adequate quality, whether -- Patient barriers may include a lack of The KS for breast cancer control provide resource-stratified Establish financial program support involved personnel are utilizing best practices and whether knowledge or misconceptions about risk pathways to facilitate decision making by policy makers, ongoing resources are available to sustain a screening program. • Consider government funding, resources factors, signs and symptoms and treatment of healthcare administrators and advocates engaged in Published examples of successful data collection programs can generated by NGOs and advocacy efforts and breast cancer. implementing breast cancer control programs at various resource levels. The KS emphasize coordinated, incremental program inform other national efforts such as in the case of Brazil, where donor support. Multi-sectored involvement should -- Health system barriers may include insufficient improvements across the continuum of care to achieve the a national information system was developed to capture and include public-private partnerships, twinning and numbers of appropriately trained healthcare best possible outcomes at each resource level. The sixteen KS organize these data. research collaborations. workers, limited access to screening/treatment for breast cancer control address planning, prevention, early • Recognize that long-range planning can shift the facilities, inadequate supplies of necessary detection, diagnosis, treatment, palliative care and policy and care expenditures from advanced disease and drugs and delays in treatment. Quality assurance programs advocacy. palliation to early detection and prevention. Program monitoring can be conducted using assessment tools Set achievable objectives to capture outcome indicators or various metrics to measure Guideline development Launch, disseminate and implement • Use evidence-based strategies that are feasible, quality, cost, access, patient experience and more. Quality cost-effective and based on local needs, interests, Developing shared standards of clinical practice that consider assurance is an essential part of any health intervention; incorrect • Implementation should focus on proven methods strengths and resources. available resources can help ensure that patients receive the pathology assessments can result in inappropriate treatment of translating healthcare policies into clinical best possible care. To that end, the Union for International practice, should consider local political and • Breast cancer outcomes are affected by how and poor outcomes. False-positive screening mammography Cancer Control (UICC) has developed the International Cancer sociocultural factors and involve all stakeholders. effectively a health system provides early results can lead to over-diagnosis and unnecessary biopsies, Control Partnership (ICCP) portal (www.iccp-portal.org) to assist diagnosis, prompt and equitable access to imaging studies or treatments. Similarly, improperly performed • Disseminate program plans (goals, objectives and countries in implementation efforts by compiling resources, optimum care and coordination of care across the surgical procedures can increase the loco-regional recurrence best practices) to health system stakeholders, toolkits and frameworks in one location (see Appendix). continuum of care. rate. Quality care results in better outcomes, improved patient professional societies and the public to ensure satisfaction and increased community trust, which are all synchronized program implementation and Determine feasibility of new programs before important to successful cancer control. messaging. widespread implementation Monitor and evaluate • Phased implementation or pilot projects may help ensure program feasibility prior to population-wide • Establish assessment, process and quality metrics implementation. and outcome measures at the start of a program, • Follow a resource-stratified pathway for program with the understanding that it may take 2-3 years development that identifies available resources or more for data to show valid outcomes. across the continuum of care.

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CONCLUSION Table 1. Continued Successful national cancer control programs require thoughtful planning that involves all stakeholders, Scenario A: Low level Scenario B: Medium Scenario C: High includes situational analysis and needs assessments, utilizes population-based data on breast cancer incidence Component All countries of resources level of resources level of resources and tumor stage at presentation and considers existing health system capacity. An evidence-based resource- stratified pathway can facilitate the process of breast cancer control program design and implementation Early • Promote early diagnosis • Use low-cost and • Use low-cost and • Use comprehensive Comprehensive breast cancer control planning is a long-term process that requires acknowledgement that diagnosis through awareness of effective community effective community nationwide promotion early signs and symptoms approaches to promote, approaches to promote strategies for early changes in population-based outcomes can take years to realize. Pilot projects, research studies and quality of detectable and in a first phase, early early diagnosis of all diagnosis of all highly assurance programs that use short- and long-term process metrics can help inform future program direction. curable tumors that diagnosis of one or two priority detectable prevalent detectable Clinicians and policymakers should remain optimistic that with effective, collaborative breast cancer control have high prevalence in priority detection tumors tumors tumors the community, such as in a pilot area with planning and the implementation of effective tools in early detection, diagnosis and treatment, they can breast and cervical cancer relatively good access to contribute to the improved health care of the millions of women. • Ensure proper diagnosis diagnosis and treatment and treatment services

Screening • Implement screening for • If there is already • Provide national coverage • Effective and efficient cancers of the breast and infrastructure for cervical cytology screening for national screening Table 1. Primary actions for national cancer control programs, according to level of resources cervix where incidence cytology screening, cervical cancer at 5 year for cervical cancer (WHO 2002) justifies such action and provide high coverage intervals to women aged (cytology) of women the necessary resources of effective cytology 30 to 60 years over 30 years old and are available screening for women breast cancer screening aged 35 to 40 years (mammography) of Scenario A: Low level Scenario B: Medium Scenario C: High Component All countries once in their lifetime or, women over 50 years of resources level of resources level of resources if more resources are of age available, every 10 years for women aged 30 to • Develop a national • Consider the • When initiating or • Full, nationwide National 60 years cancer cancer control program implementation of one formulating a cancer implementation to ensure effective, or two key priorities in a control program, of evidence-based control efficient and equitable demonstration area with consider implementation strategies guaranteeing program use of existing resources a stepwise approach of a comprehensive effectiveness, efficiency, Curative • Ensure accessibility of • Organize diagnosis • Organize diagnosis • Reinforce the network effective diagnostic and and treatment services, and treatment services, of comprehensive cancer • Establish a core • Consider palliative care approach in a and accessibility therapy treatment services giving priority to early giving priority to early treatment centers that surveillance mechanism as an entry point to a demonstration area using • Implement a detectable tumors detectable tumors or are active for clinical to monitor and evaluate more comprehensive a stepwise methodology comprehensive • Promote national those with high potential training and research outcomes as well as approach • Use appropriate surveillance system, minimum essential of curabilityrs and give special processes technologies that are tracking all program standards for disease • Use appropriate support to the ones effective and sustainable components and results staging and treatment • Develop education and technologies that are acting as national and in this type of setting continuous training for effective and sustainable • Provide support for less • Establish management international reference health care workers in this type of setting affluent countries guidelines for treatment centers services, essential drugs list, and continuous training Prevention • Implement integrated • Focus on areas where • Develop integrated • Strengthen health promotion and there are great needs and clinical preventive comprehensive evidence- • Avoid performing prevention strategies potential for success services for counseling based health promotion curative therapy when cancer is incurable and for non-communicable • Ensure that priority on risk factors in primary and prevention programs patients should be disease that include prevention strategies health care settings, and ensure nationwide offered palliative care legislative/regulatory and are targeted to those schools, and workplaces implementation in instead environmental measures groups that are • Develop model collaboration with other as well as education influential and can community programs sectors for the general public, spearhead the process for an integrated • Establish routine targeted communities (e.g., policymakers and approach to prevention monitoring of ultraviolet Pain • Implement • Ensure that minimum • Ensure that minimum • Ensure that national pain and individuals teachers) of noncommunicable radiation levels if the risk relief and comprehensive palliative standards for pain relief standards for pain relief relief and palliative care care that provides pain and palliative care are and palliative care are guidelines are adopted • Control tobacco use, • In areas endemic for liver disease of skin cancer is high palliative relief, other symptom progressively adopted progressively adopted by all levels of care and and address alcohol use, cancer, integrate HBV care control, and psychosocial by all levels of care in by all levels of care and nationwide there is high unhealthy diet, physical and other vaccination and spiritual support targeted areas and that nationwide there is rising coverage of patients activity and sexual programs reproductive factors • Promote national there is high coverage of coverage of patients through a variety of patients through services through services provided options, including home- • Promote policy to minimum standards for provided mainly by by primary health care based care minimize occupational- management of pain and home-based care clinics and home-based related cancers and palliative care care known environmental • Ensure availability and carcinogens accessibility of opioids, • Promote avoidance of especially oral morphine unnecessary exposure • Provide education and to sunlight in high-risk training for carers and populations public

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The Center for Global Health of the National Cancer Institute (USA) provided funding and input into the content of these Knowledge Summaries.

UNION FOR INTERNATIONAL CANCER CONTROL UNION INTERNATIONALE CONTRE LE CANCER 62 route de Frontenex, 1207 Geneva, Switzerland Tel: +41 (0)22 809 1811 Fax: +41 (0)22 809 1810 Email: [email protected] Website: www.uicc.org